Red Hat is another company who is working in the area and it is bringing its open source values and philosophies to shine a light on those who are “open” the default 21st century innovation model.

Open Patient tells the stories of two brain cancer patients, Steven Keating, and Liz Salmi who advocated for open healthcare data standards.

Leigh Day, VP Marketing Communications, Red Hat.

Steven Keating said that curiosity saved his life. In 2007 he volunteered for an MRI scan as part of participating in scientific research and it showed an abnormality. Keating did nothing until 2014 when he began noticing a vinegar-like smell for a few seconds everyday.

This prompted him to go back to the doctors who discovered a tumour the size of a baseball in the left side of his brain.

Since then he became an advocate for opening health data and has since collected an abundance of health data—including videotape of his surgery, his sequenced genome, and raw data from his brain scans. To date, he’s gathered and shared more than 200GB of his own medical data.

CBR’s James Nunns spoke to Leigh Day and Homer Chin, MD, MS, Associate, Health Information Technology at OpenNotes, about Open Patient.

JN: How did the Open Patient project start?

LD: “The Open Patient project is part of a film series that Red Hat produces called Open Source Stories. These films show how open source methodology transcends technology and how it can have real societal impact.

“Healthcare is so important to us all so when we heard about Liz Salmi, Steven Keating and OpenNotes, we felt quite strongly that these stories should be brought to light as they could be so helpful to many.”

Started in 2010, OpenNotes is a health informatics project in the US that is designed to facilitate patients’ access to their own medical records.

JN: What are the main challenges of running Open Source Stories as an ongoing project?

LD: “The main challenge is time! There is so much we can do with this project, so many we could speak to and so many areas of healthcare that we could touch that the team could actually work on this full time. The opportunities are literally endless.”

Why is it important for a company like Red Hat to bring attention to these types of stories?

LD: “Red Hat is a mission-based company. People come to work at Red Hat because we fundamentally believe in the goodness of open source. It’s not just about code, it’s about transparency and accessibility of information.

“Imagine what innovations could happen if more things were open and not closed.”

JN: How can the theory of open source be applied further in healthcare?

“People sharing their information to help others with similar issues is just a good thing for society as a whole and OpenNotes is working to help the world recognise that fact.”

JN: Is it possible to take part in OpenNotes without an IT or medical background?

HC: “With the advent and widespread use of electronic health records (EHRs), the opportunity exists for doctors to share their patient notes not only with other doctors,

Homer Chin is the Medical Director for Clinical Information Systems at Kaiser Permanente Northwest and Assistant Professor in Medical Informatics and Outcomes Research at the Oregon Health and Sciences University.

but with the patient themselves. In most cases, this is done via an internet patient-portal.

“No more specific IT knowledge is needed than that needed to use any other internet web-site. Some medical knowledge on the part of the patient would be useful, but

because the patient is accessing information about their own condition, it is likely that the patient will be motivated to learn more about their own health status and condition. Given that they are already on the internet when they access their doctors’ note, it is an ideal set-up for them to access learning resources and research terms and conditions that they don’t fully understand.”

“Doctors are already using the EHR and patient portals, so in the majority of cases, OpenNotes is simply an additional feature that is integrated into their EHR and patient portal. In most cases, no change in workflow is needed on the part of the doctor. They simply need to know that their patient will now be able to access their EHR notes, and plan accordingly.”

JN: Do you think this project will inspire others to share personal information for the greater good?

LD: “Hopefully, when people read about the Open Patient, watch the film and follow the social dialog, they will be inspired to share. Inspired to find ways to be altruistic with knowledge that they have. Inspired to share something small that might just help someone.”

JN: A huge concern with healthcare data is privacy and security but there seem to be obvious benefits of ‘open sourcing’ information – why would you say it’s important to continue down this route?

HC: “OpenNotes is an initiative to increase the transparency of medical information between a doctor and their patient; and to make this a standard of care. This does not imply any decrease in the privacy and security of this medical information.

“Patient web portals are typically highly secure encrypted websites that require patient authentication and sign-in. The technologies that are used are the same as those in banking and other highly secure transaction-based web-sites.

“When we talk about privacy, it’s important for patients to understand that OpenNotes does not change the confidentiality of the doctor/patient relationship. What does change is the patient’s ability to share their own information with whomever they chose–a care partner, family member, a member of the medical care team.

“In this way, the patient controls privacy. In other words, OpenNotes gives the patient the option to share their medical information with others more easily–but only if they so choose.”

JN: What other technology theories can be applied to broader community?

LD: “The idea in technology to “release early, release often” to innovate repeatedly could be very helpful to a broader community. It’s not just about waiting for a larger declaration or answer, but constantly improving and constantly moving forward.”